We are home.  Maybe you didn't know we were gone, but our family has been at the Harris family retreat in Idaho for the past 10 days.  Our time at the cabin was busy and full of people and we have many treasured memories from our time together.  We swam, skied, went wakeboarding (is that a word?)played with babies, ate, drank, sat by the campfire, and laid in the sun.  Most importantly, we did not consult our calendar or attend any appointments.

Angie surprised us by wanting to be in the water every single minute.  After a couple of days I realized why-she was completely free when she was in the water.  Balance and strength ceased to be important and she could move about easily.  Angie "swam", wearing a life jacket, using both arms and she giggled and smiled the entire time.  She repeatedly went under the water and came up smiling and laughing.  I smiled until my face hurt just watching her.  She rode behind the boat on an intertube with the older boys and she squealed with delight.  She was FREE.

We spent our days doing nothing but playing and I could not help thinking how much our lives will change in the next few days-back to school and work and each of us bound by our own schedule.  In a way I am glad that I am able to recognize the importance of our yearly tradition.  I need to remember what a gift these days have been to our family.

Now we are back and we will spend the weekend preparing for the next chapter.  One child is entering high school and playing football for the first time ever.  Another child is seeking answers to ongoing health concerns.  One child is happier than she has ever been and is basking in the reality of what it really means to be content.  And two children, with unique and varying needs, will be repeating the grade level they were in last year.  We do not regret our decisions for either one, and yet there is a grieving process for all of us that comes along with the reality of it.  

I feel that we are ready as we can be to face what is ahead.  Our family has been so blessed to have a huge support system in place.  God has placed people in our lives who love our children and are committed to helping them to succeed.  We do not take them for granted or assume they will be here with us tomorrow.  We are just grateful.  You know who you are.  If you have prayed for us, or said a kind word, you are included.  For today, I have the memories of our yearly retreat to Idaho and the hope that this year will be one of the best ever.

Crossing over

CROSSING OVER

Angie crossed over today from a weekly routine with therapy as its main focus to a routine that will focus on education.  Today, Angie had her last therapy session with her occupational therapist, Laura, whom she has seen weekly for over 3 years.  Angie has been in weekly therapy at Emanuel Hospital for 6 years-since she was 2 months old, so the decision to discontinue her therapy now was not easy.  Ultimately, we decided that a full day of kindergarten plus the trip to Portland and an hour or two of therapy was just going to be too much for her.

Giving this up wasn't easy for me for a few different reasons.  Number One-I am a creature of habit and my week has included a Tuesday trip to Portland for so long I can't remember what I did on Tuesdays before Angie came.  I will especially miss our lunch and shopping trip to New Seasons every week.  Number Two-I feel that if I discontinue Angie's therapy, I may not be doing all that I can to support her development and help her reach her potential.  Otherwise known as Mommy Guilt.  You know it well, I'll bet, if you are a mom.  Number Three-I now have to trust school-based service providers to identify Angie's needs and share them with me.  I have to give up control and that is not easy.

What to do?  The decision is made and now we will move on.  I have spent most of the summer questioning my decisions-this one and the decision to have Angie repeat another year of kindergarten.  I will never know what the outcome of either decision would have been had Toby and I chosen differently, but I do know this:

Angie is going to ROCK kindergarten this year.  Our girl is so ready!  She can spell and write her name (with a tiny bit of help), identify letters and letter sounds, identify all colors correctly, and she is learning every single day.  Her development is not that far off from that of other children entering kindergarten and I cannot wait to see her blossom this year.  She will have the tireless Ms. Stafford cheering her on and new friends by her side.  I cannot wait.

Angie will miss Laura, and her speech therapist, Chris, who left for an awesome new job last week.  She will return to the hospital next summer for a burst of therapy and I am already anxious for her to show Laura what she has learned.  Change is good, I know that.  We are heading to Idaho soon.  It is my quiet place, where I can reset the tapes playing in my head and prepare for the year to come.  It will be perfect and then, LOOK OUT KINDERGARTEN, HERE SHE COMES!

Memories

The other day, as I was driving to Portland, I pulled out a long-forgotten CD from my console as I was looking for some new music.  The CD was labeled "Momma's Mix" and Kirsten made it for me during one of my lowest times since Angie came to us.  I am still touched by the compassion of my then-18 year-old daughter.  Each song on the CD has a message of hope and perseverance through trials and as I listened to it now, I was transported back in time.  The memories of that time came to me all day long as I went about my business.  Actually, I have been thinking about it ever since.

When Angie was 18 months old, her doctor determined that Angie needed surgery to remove her tonsils and adenoids to treat sleep apnea.  She had begun having seizures 4 months earlier, so we expected the procedure to be comparatively unconcerning.  She would stay one night because of her age and we would take her home the next morning. We had no idea.....

During the surgery, Angie had begun having respiratory problems that required doctors to perform rescue measures.  She struggled to keep her oxygen levels up even with the supplemental oxygen.  As I sat in the waiting room, the 45 minutes that I was told the surgery would last stretched to over 2 hours.  Finally the nurse came to let me know what had happened.  By then, Angie was stable and we were taken to her room.

The next morning, Angie was still unable to be weaned from the oxygen and she had developed a nasty cough.  At noon, Toby went downstairs to get some lunch for us.  Five minutes later, Angie turned blue and her oxygen levels plummeted, sending the monitors into an uproar.  Nurses turned up the oxygen and her levels continued to fall.  At this point, I was asked to step back and a Rapid Response Team was called.  She was crashing.  I can't remember exactly what happened next, but we ended up in the Pediatric ICU unit (PICU) where Angie would stay for 26 days.  She had somehow aspirated fluid into her lungs during the surgery and she had severe pneumonia in both lungs.

Each day in the PICU, doctors visited and updated us on Angie's condition and the plan for the day.  They tried new medications and oxygen settings. Angie was in a world far away where we could not reach her, not regaining consciousness for over 2 weeks.  Each night, I slept in a common sleeping room with other worried parents like myself as I waited for good news.  And I prayed.

One day in particular stands out to me, about 10 days after Angie became sick.  Jordan was playing high school basketball that year and she had a game at Catlin Gable in Beaverton.  We talked to the nurse that day and she encouraged us to go to the game and promised to call if anything changed.  We were stuck in traffic on our way back to the hospital when she called.  She told us that Angie's reserves were getting low (she had little fight left) and that we must come quickly.  The doctors had decided to intubate Angie and place her on a ventilator and they wanted us to be there.  There is no positive spin here.  They were unsure she would make it.  On this day, Toby mistakenly sent me a text message meant for a friend that said, "It is really looking bad and I don't think Kara knows".  But I knew.

I have to keep these memories and bring them out sometimes, as difficult as they are.  They are the thoughts that bring me hope when I am discouraged.  The memories of this time remind me how truly strong our family is.  The memories tell me that God can and does perform miraculous healing-even more than once per person:). The memories keep me fighting to find new and better treatments for my children, and for other people's children.  The memories tell our family story.

Angie came home 26 days after surgery to remove her tonsils and adenoids.  During that time, her surgeon visited every day, even his day off, and apologized to us kindly every day even though he was not at fault.  Joshua celebrated his 9th birthday with a party in the hospital atrium.  Toby and I took turns sleeping at the hospital and caring for the kids at home.  Angie recovered from pneumonia, only to then develop a blood infection from her central line. She became physically dependent on the narcotics that controlled her pain and had to complete a medically managed withdrawal process before she could be discharged.

On that 26th day, I could not wait for our family to be together again.  Not one of us was unchanged by Angie's illness and the kids still talk about it occasionally.  I am sorry that Angie was sick, but I am not sorry for what I have learned.  My faith was strengthened and my compassion for parents with sick kids is heightened.  I have kept my CD in the player for now, but I am ready to put the memories away until I need them again.

HOME!!!